Welcome!!!

A primer for newbies and old pros alike.
User avatar
GLS18
Contributor
Contributor
Posts: 98
Joined: Mon Aug 27, 2018 7:21 am
Location: NYC area

Re: Welcome!!!

Postby GLS18 » Tue Feb 19, 2019 9:00 pm

Siouxie wrote:I have FH and have just decided to come off all Statins :-)

My mother had alzheimers and passed away last week. I want to understand as much as possible to ensure I am making the right choices (if thats at all possible). I live in middle England :-) Looking forward to learning. I see a lipid specialist once a year - for about 5 minutes who says the exetimible/Rovustatin has reduced your cholesterol - see you in a year. Hmm. Lets see what he says In May when he sees I have stopped the statins and lost 2 stone


Hi Siouxie & A Very Warm Welcome To Our Community!

You have come to the right place, as our members share knowledge, insights and feedback regarding their successes and challenges with taking back their cognitive health. We learn and grow together, as you will continue to discover through the many forums accessible to you on our site. The How To Get The Most Out Of The ApoeE4.Info Website is another resource that will support you in navigating all aspects of the site and searching for topics most critical to your growth.

I'm very sorry to hear about your Mom's recent passing. It is incredibly tough to lose a loved one to Alzheimer's. What a wonderful way to honor her memory through a commitment to your own cognitive health!

Wishing you well on your journey. We invite you to ask questions and share your thoughts, as you move forward. Please let us know how that future doctor's visit goes:) We are rooting for you!

Again, a warm welcome:)
Gina
Functional Medicine Certified Health Coach
Reversing Cognitive Decline For Coaches Certification Candidate, Fall 2018
"Live as if you were to die tomorrow. Learn as if you were to live forever." - Mahatma Gandhi

GoldenGirl
Contributor
Contributor
Posts: 5
Joined: Fri Mar 22, 2019 5:02 pm

Re: Welcome!!!

Postby GoldenGirl » Fri Mar 22, 2019 5:55 pm

Apologies in advance if this is not the correct area on the forum to post this question (I’ve been a member for only 20 minutes of so!).

Has anyone paid the $1399 to take the “cognoscopy” testing offered through Dr. Dale Bresdesen’s website. If so, were you pleased with the process and satisfied with the level of feedback you got in your report? I just finished reading “The End of Alzheimer’s” and very much want to get tested for what he covers in his book. I already know through a 23andMe test does years ago that I have 4/4. I didn’t think too much about this fact till after reading the book. (Now I’m kind of confused and somewhat scared.) The price tag for the “cognoscopy” test is steep for me, but possible. But first I’d love to hear others’ experiences with the testing process and if the final report satisfied what you were hoping to get from the testing process. Thanks!!

User avatar
slacker
Mod
Mod
Posts: 1812
Joined: Wed Aug 03, 2016 6:20 pm

Re: Welcome!!!

Postby slacker » Sat Mar 23, 2019 5:10 am

GoldenGirl wrote:
Has anyone paid the $1399 to take the “cognoscopy” testing offered through Dr. Dale Bresdesen’s website. If so, were you pleased with the process and satisfied with the level of feedback you got in your report?


Hi GG;

If you search on "AHNP", you will find multiple conversations on people's experience with this company's services, including a list of tests included. You will notice that not all the lab tests mentioned in "The End of Alzheimer's" are included. Our search function is found by clicking the magnifying glass in the toolbar, right upper corner.

Since you are young and with no cognitive problems, you may want to take the cognoscopy labs in sections rather than doing them all at once. The primer written by a 4/4 MD member has a suggestion for where to start with labs; you can find the chapter here. None of these tests are "exotic". Some practitioners would be willing to order (some of) these at an annual physical, when they don't have to have appropriate diagnosis codes to justify everything ordered. Another option is direct to consumer lab centers where you pay out of pocket and select your own labs that you want drawn; you can find a list here.

This is all very complicated, confusing, and overwhelming. Luckily, these are early days for you, and you have the luxury of time to move forward. It's reasonable to focus on the lifestyle changes (nutrition, sleep, exercise, stress management), and slowly chip away at the labs as financially possible.

PS. don't worry about where you have posted; we try to be flexible as well as supportive here!
Slacker
E4/E4

Ned
Contributor
Contributor
Posts: 5
Joined: Sat Dec 01, 2018 6:35 pm

Drug trial news.

Postby Ned » Tue Apr 02, 2019 9:19 am

As I mentioned before, I've signed up for a drugs trial.

I had a bunch of cognitive tests and my first MRI last month. Yesterday I had my first PET scan. I'm booked in for an FDG PET tomorrow and if that's OK I'll get my first batch of pills in a couple of weeks.

It's a placebo-controlled double-blind study so I've no idea what the outcome may be – probably nothing.

Then again, nothing ventured!

NF52
Support Team
Support Team
Posts: 1030
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: Drug trial news.

Postby NF52 » Thu Apr 04, 2019 1:05 pm

Ned wrote:As I mentioned before, I've signed up for a drugs trial.

I had a bunch of cognitive tests and my first MRI last month. Yesterday I had my first PET scan. I'm booked in for an FDG PET tomorrow and if that's OK I'll get my first batch of pills in a couple of weeks.

It's a placebo-controlled double-blind study so I've no idea what the outcome may be – probably nothing.

Then again, nothing ventured!
Congratulations, Ned!

I'm guessing that you're nearing the starting line (or the finish line of the screening) for the 5-year Generations 2 trial of 2 different doses of CNP520 vs a placebo. When I was at my 18-month visit for the Generations 1 trial last week, I learned that in January, 2019, the outside evaluators for the study, who have no tie-in with Novartis or the study sites, met to review the safety data on both CNP520 and CAD106, which is part of the Generations 1 drug trial. They can see the "unblinded" data on all participants. They concluded that both have shown no serious side effects and no issues that would require a cancellation of the trial at this point. The only side effect of note with CNP520 was that some participants taking the "real" drug developed mild itching. The site I go to has had no one reporting that; I think in the Stage 1 trials about 14% of people on both the placebo and the drug reported itching.

So I hope you feel great about making a contribution to understanding the effects of CNP520 as a BACE-1 inhibitor of the amyloid precursor protein, and that you enjoy being part of a group of people who don't mind giving blood and taking tests for a good cause!!

You're part of a "Study Buddy" cohort now, with about 10 of us on this forum in either Generations 1 or 2.
4/4 and still an optimist!

Ned
Contributor
Contributor
Posts: 5
Joined: Sat Dec 01, 2018 6:35 pm

Re: Congratulations, Ned!

Postby Ned » Fri Apr 05, 2019 2:47 am

I believe I am part of the generation one study because I'm homozygous but I'm part of the second cohort so I will have the tablets rather than the injections. I've been a scientist my whole life so I'm very happy to contribute whatever I can.

NF52
Support Team
Support Team
Posts: 1030
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: Congratulations, Ned!

Postby NF52 » Fri Apr 05, 2019 2:04 pm

Ned wrote:I believe I am part of the generation one study because I'm homozygous but I'm part of the second cohort so I will have the tablets rather than the injections. I've been a scientist my whole life so I'm very happy to contribute whatever I can.
Yes, it sounds like you are in "arm 2" of Generations 1, which is restricted to people with ApoE 4/4, and in which participants are randomized to either CAD106/placebo or CNP520/placebo. My understanding is that since CAD106 started several months earlier than the CNP520 arm at most sites, that they may reach the required number of participants sooner and at that point the remaining participants would be enrolled in the CNP502/placebo arm.

People with ApoE 4/4 can be enrolled in the Generations 2 study and some sites, I believe, are only in Generations 2, which is studying a 15 mg and 50 mg dose of CNP520 vs. a placebo. People with ApoE 3/4 are also eligible for that study if they pass screening assessments, including a PET scan which is positive for amyloid. As a result, they are the only group in the two studies to get the results of their PET scans, as I understand the protocol.

Your scientist self and your altruistic nature both deserve thanks!
4/4 and still an optimist!

User avatar
Greenman222
Contributor
Contributor
Posts: 5
Joined: Sat Jun 08, 2019 2:32 pm

Re: Welcome!!!

Postby Greenman222 » Sat Jun 08, 2019 2:39 pm

I’m glad I found this forum by accident. I have Hereditary Haemochromatosis. Homozygous for the H63D gene mutation. Which has given me a terrible short term memory and low cholesterol. I have read this maybe due the the APOE e4? How to learn more about here.
Homozygous H63D Haemochromatosis ~ It’s more than just iron overload!

User avatar
SamNZ
Support Team Intern
Support Team Intern
Posts: 81
Joined: Wed Feb 13, 2019 1:19 pm

Re: Welcome!!!

Postby SamNZ » Sun Jun 09, 2019 4:21 am

Greenman222 wrote:I’m glad I found this forum by accident. I have Hereditary Haemochromatosis. Homozygous for the H63D gene mutation. Which has given me a terrible short term memory and low cholesterol. I have read this maybe due the the APOE e4? How to learn more about here.


Hi Greenman222,
We are so glad that you found us! A great place on this site to start for a great introduction to everything you want to know about the Apoe4 gene is the Primer (click on the word and it will take you there). If you have any specific questions, asking the Wiki, or on the forum can bring out a wealth of information from all of our community, we are all independents but there is an amazing amount of knowledge. We would love to know more about you and how you found us in Our Stories. Don't hesitate to keep asking as you journey around. Kind regards SamNZ
Samantha McBride
Functional Medicine Certified Health Coach

bosco
Contributor
Contributor
Posts: 7
Joined: Sun Mar 08, 2015 3:17 pm

Re: Welcome!!!

Postby bosco » Sun Jun 30, 2019 10:46 am

It's been a year since I participated in a conversation on this site and I only posted a few times. I would like to become involved again but I'm not sure how to join the conversation, that is, where to post and how to reply. Just need a little help and a few pointers.
Many thanks,


Return to “Getting Started”

Who is online

Users browsing this forum: No registered users and 2 guests